Welcome to Julia's Site!

This blog is made available for several reasons. First and foremost, to keep those that know Julia current with what is going on with her and her progress. It is also my intention to educate those who do not know Julia about what happened to her, so they can make educated decisions about their own children. I want to welcome those of you with questions about her disease, treatments, and just the general life (the good and the bad) of living with a brain damaged child. Finally, it is a therapeutic release for me, Julia's mom, Susan. I love writing and need to get some of this stuff out of my head and onto "paper". Thank you!

Thursday, April 16, 2009

4-16-09
Julia had a follow up with her physiatrist today.....that is a doctor of physical therapy. Julia's physical therapists had been wondering about the braces that she has for her legs, and whether they were really necessary or if they needed to be changed, etc....so, we saw Dr Apkon today. She said that she is really happy with the way Julia's right leg and foot look. She is not thrilled with the left foot and lower leg, but feels the brace she has for that leg is overkill....so we get to get a new one......She is worried that if we just forgo the brace, she will end up with problems in one of her tendons and need surgical correction.....so we will get set up for a new brace. Hopefully Julia will leave it on! That was the whole problem with the last set of braces! She took them off, even when I duct taped them on! Dr Apkon also recommended a cast for Julia's right arm....to prevent her from using it so freely so that she is forced to use the left one more...she said there have been studies from older stroke victims, who years later used this approach, and they were able to see definite changes, even on MRI's of their brains. The cast is removable....that is nice for bath time, etc... I asked her about when I should expect things to plateau with her gains, and she said, for motor stuff, usually by age 7. So she has four more years to improve! That is great news! As far as cognitively, she suggested having some formal tests done that are made for nonverbal individuals in two years to see where she is at. I wish we didn't have to wait so long for that, but she said it is just too hard to test when they are so young and nonverbal. Personally, I think she understands a lot, all things considered. So, overall it was a relatively positive appointment. Talk to you later!

7 comments:

  1. This is excellent news to me, as it is not only somewhat encouraging, but more importantly NOT bad news. This is overdue and welcome! Fortunately there seems to be some positives, a game plan, and hope. As I am lucky enough to have seen her progress over the last year, I can tell you that this is heartwarming.

    ReplyDelete
  2. This is awesome Sue! So glad to hear she is doing better with her legs. Great idea about the cast too. Love the blog, keep it up!

    ReplyDelete
  3. Great news about Julia's recent medical appointment. So glad to see you created a blog to keep us all posted on Julia's progress. I will be following it on a regular basis.

    ReplyDelete
  4. i agree! this is good news, and i love that there is a PLAN in place. things to look forward to! good stuff! keep posting, this will benefit MANY people, you never know who you might touch with your journey...love, JLR

    ReplyDelete
  5. Restraint therapy and braces.... yipee... sounds like you had a great time!!! We are upping kenzie's time in her AFO's and using her hand splints too. Just get out the duct tape! HEHE!

    ReplyDelete
  6. Wonderful news about her appointment! I KNOW she understand what we say to her! Tell her Grandma and Grandpa love her!

    ReplyDelete
  7. Susan,
    I'm so glad you created a blog. I will continue to check back. Julia sure is a cutie-pie. !!!
    Whitney Booze
    www.suzybooze.com

    ReplyDelete